Barth syndrome

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What is the life expectancy for someone with Barth syndrome?

Heart disease and the risk for infection bring the greatest risk for mortality and morbidity in people with Barth syndrome. If either of these are severe enough, life expectancy can be limited to the first few years of life. Improvements in medical care have increased this, and one 2013 study showed that a risk for early mortality seemed to peak in the first few years of life. New treatments and increased awareness continue to keep people with Barth syndrome healthy.

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How do I tell my child's school about his having Barth syndrome?

How do I work with different doctors for my child with Barth syndrome?

What should I know about the diet for children with Barth syndrome?

What should parents and siblings of people with Barth syndrome know?

Can I create a plan for my child's school about Barth syndrome?

How do I help my adolescent with Barth syndrome with transition planning?

What are the nutrition needs for people with Barth syndrome?

How do I tell my child's school about his having Barth syndrome?

Specific strategies may be helpful when speaking to your child's school about your son having Barth syndrome. You can discuss academic issues, social issues, practical issues, in-school health issues and make a request for regular team meetings. For boys with Barth syndrome in kindergarten and higher grades, there can be challenges with mathematics and some visual-spatial skills. There may also be some speech delay/concerns. Additionally, fatigue is often an issue preventing individuals with Barth syndrome from completing a school day like their peers.

More information is available from the Barth Syndrome Foundation.

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How do I work with different doctors for my child with Barth syndrome?

There are some strategies to consider when working with multiple medical specialists for different medical appointments. This includes ideas like keeping copies of all your child's records, sharing information, and asking lots of questions. More information is available from the Barth Syndrome Foundation in a document called "Practical Tips for Individuals with Barth Syndrome" that is available at https://www.barthsyndrome.org/barthsyndrome/familyresources/factsheets.html.

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What should I know about the diet for children with Barth syndrome?

Boys with Barth syndrome may have very low blood sugar (hypoglycemia), so may need to eat meals more often. Infants and young boys may also benefit from eating raw (uncooked) cornstarch before long periods of fasting (such as overnight). More details are available from the Barth Syndrome Foundation in a document called "Cornstarch" available at https://www.barthsyndrome.org/barthsyndrome/familyresources/factsheets.html. Discuss all of this with your doctor before making any diet changes for your child or yourself.

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What should parents and siblings of people with Barth syndrome know?

Specific strategies for navigating life with a boy who has Barth syndrome can be very helpful. These include things like coping with pain, empowering siblings, and instilling hope. The Barth Syndrome Foundation has plenty of details in a fact sheet.

References
Can I create a plan for my child's school about Barth syndrome?

Partnering with your child's school to discuss Barth syndrome can be very helpful, as issues can come up in terms of health and academic concerns. Regular team meetings can also be effective. The Barth Syndrome Foundation has information and resources to help you with this.

References
How do I help my adolescent with Barth syndrome with transition planning?

Young adults with Barth syndrome may need help and support when it comes to transitions in their health care, schooling, employment, and beyond. Teaching them about these issues can foster independence in all of these areas. Global Genes Toolkit has information about transitioning to adult care. The Barth Syndrome Foundation also has a fact sheet.

What are the nutrition needs for people with Barth syndrome?

Due to issues related to heart failure, fatigue, complications related to neutropenia (and other issues), boys with Barth syndrome can have complex nutrition issues. Specific tips for infants/children/young adults can be very helpful. The Barth Syndrome Foundation has details in a document called "Nutrition Facts in Barth Syndrome" available at https://www.barthsyndrome.org/barthsyndrome/familyresources/factsheets.html.

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